Heart — TransplantLyfe

Heart

Preparing for my son's heart transplant

Rachelle619Care Partner
February 4, 2021 in Heart

I'm so glad to see there's a place where Transplant patients and caretakers can go for support and so on. This has been a crazy journey. Many bumps in the road. Trying to meet requirements set forth by the Transplant team 'Financial' and so on. I'm curious how other's prepared, what kind of requirements did they have. What kind resources have people found to help out different things that come with Transplant. I'm curious how people have done after receiving their new heart. After eval, issues came up and we have been put on hold so they can do a eval on his lungs. We may be a lung transplant on top of his heart. I'm just wanting to hear other people's experiences. With covid and my son's health were isolated. Some times it feels like we are the only one's going thru this in the world. I know we were not but sometimes you just get stuck in your feelings.

1 - 4 of 4 Replies

  • ChefAmandaTransplant Patient

    Hello @Rachelle619! Welcome to the TransplantLyfe app. My name is Amanda and I had a heart transplant 17 years ago as a teenager. I understand your feelings and struggles completely. Going thru the evaluation can be a long a rough process. Also the financial part is really hard. We started fundraising as soon as we got approved. We used the National Foundation for Transplant. https://transplants.org/ They were a great help.

    Thank you for sharing your story. I know there are many recipients and care partners on here that will share their experiences and give you some ideas as you begin yours.

    February 4, 2021
  • AliEm14Transplant Patient

    I’m a liver transplant but for financial support our transplant social worker was able to set us up with an organization that provided a really cheap apartment for us right across from the hospital. My friends and family also set up a go fund me to help with our medical bills.

    there are a lot of options and resources available but they aren’t widely known, so ask your transplant team. Hoping for the best for your son.

    February 4, 2021
  • JimGleason_TRIOTransplant Patient

    Another good organization that can help you with your funding campaign is Help, Hope Live in PA. You can find them at https://helphopelive.org

    February 4, 2021
  • Denise_RTransplant Patient

    Hi @Rachelle619

    Welcome! I'm a heart transplant recipient and have founded a nonprofit to help other heart transplant recipients with their post transplant housing. We currently serve only Northern California. Where are you located? When I went through it, we had family and friends who helped us financially. It is so hard to figure it all out. Happy to talk more if you need!

    February 9, 2021
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